I started to feel like I was going mad. It was the worst time of my life, ever. I was so mentally unwell.

It’s hard to know when the symptoms started because you can just have pain and it doesn’t have to be axial SpA. But, looking back now, I know the start for me was when I was about 16 years old. 

It was my first year studying music, dance and theatre at West Thames College and I had this tremendous ache in my hip. I could never find it and I always remember thinking ‘I’ve got this pain in my bum, but then it’s in my hip and then it’s in my side’, I’d always press and try to find it but couldn’t pinpoint the source. That pain got worse and worse to the point that I couldn’t put any weight on my leg. Up until this time in my life, I lived for dance, contemporary and street being my favourite but now I was like an old woman; I couldn’t even get out of the car! 

Things got so bad that I was in and out of A&E on a regular basis. The pain would come and go but when it was there, it was excruciating. I couldn’t sit down without rocking from side to side. I saw every healthcare professional you can think of – osteopaths, physios, rheumatologists… I had MRI’s, x-rays, blood tests… If I knew then, what I know now about axial spondyloarthritis… I’d have known straight away that it’s what I had. My symptoms were textbook.  

But I just couldn’t get answers from anyone. I started to feel like I was going mad. It was the worst time of my life, ever. I was so mentally unwell. I was fragile, scared, constantly knowing there was something wrong but always being told it was all in my head.   

Eventually, an MRI scan picked up on fusion in my spine and a rheumatologist diagnosed axial SpA.    

I was scared, I had never heard of this condition and now I was terrified that my mobility would soon be severely impaired. I frantically searched for answers but all I could find was bad news. I now live with irreversible damage to my spine and am so frustrated because I feel like it could have been avoided. I’ve reached a stage where I’ve accepted my circumstances but, without the dance, I will always feel like there’s a huge part of me missing.    

With my diagnosis in hand, I’m now on the right medication and am doing everything I can to make sure the condition doesn’t get worse.  

I’m determined to get young people talking about axial SpA, so that they can identify the symptoms early and get help as soon as possible. 

With my diagnosis in hand, I’m now on the right medication and am doing everything I can to make sure the condition doesn’t get worse.